My daughter Rhiannon has life-threatening food allergies.
There are two categories of food allergies.
Immunoglobulin E (IgE) mediated
Symptoms result from the body’s immune system making antibodies called IgE antibodies. These antibodies react with certain food. The reactions can be mild or severe which could lead to anaphylaxis requiring epinephrine.
Other parts of the body’s immune system react to certain food. The reactions cause symptoms, usually vomiting or diarrhea, but do not involve the IgE antibodies and do not require epinephrine. A person can have both IgE and Non-IgE mediated food allergies.
Rhiannon falls into both categories.
Her peanut allergy is life-threatening and involves the IgE antibodies.
A reaction may have the following symptoms: skin rash, itching, or hives; swelling of the lips, tongue or throat; shortness of breath, trouble breathing, or wheezing; stomach pain, vomiting, or diarrhea; and an overall feeling of impending doom. This IgE mediated reaction can lead to anaphylaxis and even death. Epinephrine must be administered. She may also need her albuterol inhaler.
Although Rhiannon’s tree nut allergy is also IgE mediated it is mild and will not cause anaphylaxis unless the tree nuts are co processed with peanuts. If exposed to tree nuts and a reaction occurs, it would usually only require Benadryl.
Rhiannon has Non-IgE mediated reactions to melons, coconut and gluten. The symptoms she usually experiences associated with these foods are stomach pain, diarrhea, or sores around her mouth.
It is extremely important to know the difference between food allergies and food intolerances.
A little history…
Before Rhiannon was diagnosed, she was sick a lot. She had constant sinus and ear infections. She would battle 104/105 degree fevers that would last for hours up to days. Her skin was covered in such severe eczema that it was peeling off in places. She would get staph infections when she had a bug bite because her skin was so broken down. Once she was diagnosed, all of these symptoms disappeared. The amazing thing is that I never ate peanuts or tree nuts around her. The symptoms she was experiencing were just because of co processing (made on the same equipment).
Rhiannon’s first exposure to peanuts was when she was 18 months old while at daycare. She had a bite of peanut butter on a saltine cracker. Her daycare provider called me and said that Rhiannon was starting to swell and they thought it was from the sunscreen. Thankfully, I worked two blocks away. When I showed up, I was not able to recognize her. She was so swollen I was not able to see her eyes, nose, ears, or lips. I immediately poured Benadryl down her throat. Thankful now that I always had that in her diaper bag and also that she did not choke on it. I then took her to the emergency room.
In the ER they monitored her airways and gathered information. I had called her daycare provider and that is when she told me about the peanut butter. When I informed the ER tech, he said it was probably from the sunscreen because she was too young to have a food allergy. I did not have any real experience with food allergies so I believed him.
Unfortunately, Rhiannon continued to see the doctor or be in urgent care weekly because of symptoms. It was in November 2009 that we went to the ER because she had a fever of 105 and had become listless.
The doctor ran tests, monitored her and tried to catheterize her. That is an experience I will never forget. As we held her down, along with the nurses, so that they could use a feeding tube to catheterize her because she was so small, Rhiannon screamed over and over, “Mommy please make them stop. Mommy why are you doing this. Why are you hurting me?” They did not find anything wrong. The doctor said we should see an allergist/immunologist.
In January 2010, just shy of her two-year birthday, we saw an allergist. After many tests, we were told that Rhiannon had severe food allergies to peanuts and tree nuts. She was put on Singulair, Zyrtec, Flonase, and an Albuterol Inhaler. She was given EpiPens to carry at all times. She also was given Triamcinolone for her eczema. Zyrtec caused mood swings and Rhiannon became very violent while taking that. She is now on Claritin and the Singulair was eventually removed also.
Rhiannon goes yearly to the allergist. She has blood work and other tests done. We have found that the severity of her tree nut allergy has gone down. Unfortunately, the peanut allergy will still cause anaphylaxis.
How does this affect us?
There is no cure for food allergies. The only way to prevent a reaction is avoidance. As you can imagine, avoiding a food allergen isn’t always easy. I am sure that I am seen as a “helicopter mom” or controlling. When it comes to Rhiannon’s allergy, you are darn right I am! I am her advocate and I am raising her to be strong, independent and confident.
Rhiannon has learned that she has to sit at her own table at school because the other tables could potentially not be safe. She has learned that she may go without a treat because we cannot guarantee it’s safety. She packs a meal when we go to funerals, birthday parties, and some family gatherings.
Times that are meant to be celebrations, fill me with dread. People have good intentions and tell me, “Oh it doesn’t contain peanuts.” Yes, although that may be true, were any of the ingredients made in the same facility as peanuts?
One tiny amount ingested could lead to anaphylaxis and even death.
I have had some people say to me, “So what if she is exposed. That is what her EpiPens are for.”
Unfortunately Epipens do not guarantee Rhiannon will be safe. If the Epipens are not administered soon enough she could still go into cardiac arrest. There are so many cases of kids and teenagers that the Epipens did not save. These kids went into cardiac arrest, became brain dead and then their families had to make the decision to take them off life support.
Peanuts, peanut butter and peanut oil are used in so many products, not just food. Glue, ear drops, lotions, hair products, bird seed, cat and dog food, and paints are just a few. How do I keep all of these out of the reach of my daughter?
How do I raise my daughter to be open and loving with others without letting them hug and kiss her because they might have eaten something unsafe?
How do I teach her to share yet still keep some things out of the reach of others because they may have peanut residue on their hands, mouth, or clothes?
How do I send her to school, knowing there is peanut butter around? Do they know that hand sanitizer just rubs the protein around and doesn’t get rid of it?
How do I let her stay overnight somewhere else, when a child can die in their sleep after eating an allergen?
How do I let her grow and mature into a young adult that wants to date?
What if her boyfriend kisses her after a peanut butter sandwich and she doesn’t come home to me?
What do I do if I receive that dreaded phone call telling me she went into anaphylaxis?
How do I raise her to be well-rounded and involved, when all I want to do is put her in a bubble and keep her safe?
What is the solution?
Since Rhiannon was diagnosed, she was made aware of the fact that she had to take ownership of her body and life. She needed to be responsible for anything and everything she put in her mouth or touched.
Rhiannon is very confident when it comes to asking others information about food, snacks, or products. She isn’t afraid to say that something makes her uncomfortable and avoids whatever it is.
Informing our family and friends has been an important aspect to bringing about awareness. We have open communication with the staff at Rhiannon’s school. I am thankful that there are so many caring people in her life that take her allergies seriously.
We have unfortunately, crossed paths with those that think Rhiannon’s allergies are for attention. They think food allergies do not exist. Or they assume she has a food intolerance.
If you or anyone you know has a food allergy, please talk about it. Don’t be afraid to learn more details so that you can help provide a safe environment.
There are websites that are very beneficial:
Please be part of the solution!
Tammy, Food Allergy Mom
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